Rare Disease Day Parliamentary Event – 20th February 2019
The event coincided with Rare Disease Day – #rarediseaseday – on 28th February and was hosted by Rare Voices Australia. This year’s global theme – ‘Bridging health and social care’ – focuses on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families face every day. It also follows the Governments commitment to develop and fund Australia’s first National Strategic Framework for Rare Disease. The 6 strategic priotities being:
diagnosis, access to treatment, data collection, co-ordinated care, access to services and co-ordinated research.
Speakers included Trent Zimmerman, Greg Hunt MP and Steve Georganas MP – Federal Member for Hindmarsh who showed their continued support for people living with Rare Disease in Australia.
It was certainly an opportunity for MdDS Australia and our voice to be heard…..
MdDS Australia Conference 26th August 2017
What a day! Close to 40 attended. Our guest speakers were fabulous. Videos can be viewed by following the links below.
Many thanks to:
- Donna and Greg Millott for funding this event.
- Alan Hogden of Newgentronics for donating lucky door prizes of a bluetooth speaker, media box and a solar charger in addition to which filming the event.
- Maureen Jarrott and her sister Rose Jongkind (who flew in from WA even though she does not have MdDS, but came to support us all). for collecting donations.
- Our guest speakers – Dr Luke Chen, Associate Professor Alan Pearce, Dr cherylea Browne.
- And course those of you who attended!
Here’s an overview:
Dr Luke Chen, Neurologist
‘MdDS in the World of Neurology’
– MdDS is not a psychological condition.(for which he was applauded)
-Available medications to reduce symptoms and their affects and how they work in the body
– Available treatments. Dr Chen fully supports Repetitive Transcranial Magnetic Stimulation. A description the Opto Kenetic treatment offered by Dr Dai at Mt Sinai in New York.
– The earlier patients are diagnosed and treated, the better chance of remission
Associate Professor Alan Pearce, Neuroscientist, La Trobe University, Melbourne
‘Utility of Neuromodulation for MdDS’
– How rTMS works in the brain as a non-evasive treatment for MdDS
– The success of his work to date as published in the Journal of Neuropsychology 2015.
– More research is needed.
Dr Cherylea Browne, Neuroscientist and MdDS sufferer, University of Western Sydney ‘MdDS and Hormones’
– Was given a grant to persue hormonal research in regards to MdDS.
– Research studies involve motion induced MdDS, spontaneous onset, pregnancy and MdDS, together with patients who have been asked to keep a longitunal diary to correlate symptoms with daily activities together with hormonal symptoms.
– A sympathetic nervous system study is also underway.
Chris Daws, Founder MdDS Australia and MdDS sufferer.
– Mind over matter – how we can use our minds for symptom relief
– Explored options on how we CAN use different techniques to better self manage symptoms of MdDS. Such as meditation and distraction.
Chris, Founder MdDS Australia Support Group